Dear forum members,
I have just been diagnosed with a relapse of FL and looking for some advice/thoughts of others who have had specific treatments.
A bit of background - I had stage 4 FL in 2020 in lockdown (not fun), I was on this forum then but not really since. Treatment with Obinutuzimab and CHOP was successful, I had 2 years of Obinutuzimab maintenance, and in all had 5 years in remission.
Due to some symptoms, I've recently had a CT then biopsy of a lesion in my chest which is FL. It's quite small and there doesn't seem to be any other lymphoma on the scan (though I haven't had a PET-CT this time).
I saw my consultant and she has mentioned the following options:
1. Radiotherapy to the lesion.
2. Rituximab with either lenalinomide or bendamustine.
3. The Refract trial.
4. The Olympia 5 trial.
My question here is - has anyone had these treatments/trials, and what was your experience of them? I'm concerned that if I have radiotherapy, it won't knock out other lymphoma cells in the body, and we all know that it's a whole body disease.
Also, if I enter a clinical trial with the bi-specific antibodies (above), this may make me ineligible to have them in future if/when I relapse again and if they are approved by NICE.
My consultant was going to discuss me at the MDT and see me again next week. Unless they have a specific recommendation, it seems like she is going to let me choose. Any comments will be helpful, and thanks in advance.
Joy
Hi again JoyJoy57 but sorry to hear about your relapse……. as my oldest granddaughter would say “pants grandad”
As you may remember I don’t have Follicular Lymphoma but have been on my cancer journey for over 26 years with two very rare, hard to treat types of T-Cell Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer.
It will be interesting to see what the MDT recommend….. I relapsed with my first type if T-Cell multiple times over my first 15 years and was only ever in partial - remission the longest being 9 months.
Let’s see if any of the group members who were given the same choices or treatments to pick up on your post and give their prospective.
When my second very aggressive T-Cell appeared in Oct 2013 I had no choices to make…. I was a passenger in the 2 year treatment process.
In all my years I have never had a PET scan….. only MRIs, CTs and Bone Marrow Biopsies.…… but I have had a total of 45 radiotherapy zaps over the 2 years main treatment (5, 10 and 30) compared to all my other treatment the radiotherapy was the least demanding….. and they did the job they were required to do.
Are you in the UK Joy?
Good morning Joy….. even with treatments like full on chemotherapy there is still a ‘chance’ that rogue cells will be missed.…. this is the balance, challenge of treating slow growing, lingering Low-grade Lymphomas like your FL and indeed my CTCL.
When I had my first Allogenic (Donor) SCT back in June 2014 I had 10 sessions of Total Body Irradiation as part of my prep….. even after having 750+ hrs chemo they were still not 100% confident I was in full remission so the TLI was used to blast all my lymphatic system and bone marrow…. basically switching off my whole immune system and the bone marrow’s ability to produce blood cells !!!!……. 6 months later I was told the graft had failed…… yup a great Christmas Eve gift….. but another Allo SCT later (Oct 2015) I am still here living a great life.
This group has been on the slow side for a while now…… this may be down to the increasing profile of Lymphoma Action the UKs main Lymphoma charity.
The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……
You may want to widen your support and information base by checking them out
They run various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey and have had to make the same choices…
Their very active Closed FB group alone has over 6500 members…… unfortunately you would most likely bump into me on there also ;)
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
